A Port Removal and New Beginnings

Friday is a big day. My husband and I will take Caeleb to the Hemophilia Treatment Center for bloodwork. If all looks well, we may discuss removing his port-a-cath. Not replaced. Removed. It’s not that his veins are fantastic, but Hemlibra (emicizumab-kxwh) is doing what it is supposed…

My Youngest Son Becomes a Teenager

My mighty warrior Caeleb is officially a teenager. His voice is cracking and becoming lower, he eats a lot, and he is growing taller every day. Where did the time go? Sometimes I feel overwhelmed by the passage of time; the older I get, the faster time seems…

When Loss Leads to Strength

I have been part of the bleeding disorder community for over 20 years. The early days were filled with fear as I learned about hemophilia with my newborn son. Over time, I began to feel a little more comfortable with this rare genetic bleeding disorder. I wanted…

My Wishes for the New Year

I often find myself thinking back to the advice my parents gave me over the years. Of course, I considered it “nagging” rather than advice at the time, but the older I get, the more I realize my parents were two of the smartest people I’ve ever known.

One-word Resolutions for the New Year

I am already looking forward to 2019. The first half of 2018 was not filled with joy, but fortunately, the last six months have been pretty wonderful. Part of this has been Caeleb’s new treatment with Hemlibra (emicizumab-kxwh). It has truly changed our lives. His quality of…

Reaching Out and Inspiring Joy

I vividly remember attending my first bleeding disorder conference in 2008. It was overwhelming. The exhibits had products and services that my son would need, and the workshops and topics were new and very unfamiliar. The attendants seemed like they were at a family reunion! How did they…